How do we navigate our health care system?

This is about a patient I saw at the community clinic. We are running a community clinic for women in sex work in Swathi Mahila Sangha, a community based organisation in Bangalore. With partnership with Swasti, we at PCMH Restore Health are available in person once a week (Fridays) at that location and the women come there either with the intention of seeing us or for availing other services like banking, loan etc and come to know about us and then see us.
We started this community clinic to understand the community, their health needs and also understand what their expectations are. The experiences in this clinic I believe will help us find more providers in that area and also know what works and what doesn't for navigating the current primary care system in Bangalore.

Last Friday, a women was brought by the outreach worker because she thought she is seriously not doing well. She was right.
The woman is 36 years old, very thin and had lost that weight in the last 3 months and now came with extreme weakness in all limbs and tremors of all limbs. Her heart rate was racing with 130 beats per minute rate and BP of 140 by 100 mm of Hg. Systemic examination was normal apart from spleen being palpable. She lost her younger sister in a terrible accident/attack recently and that has been traumatic for her. She also used to consume a lot of alcohol everyday since the past many months and her last drink was 2 weeks back. She stated that from past one month the amount of alcohol she used to take had reduced. She has burning sensation and pain in the palms, mild proptosis of the eyes (bulging out). She was recently tested for HIV and was found to be negative. My suspected diagnosis were
1. Hyperthyroidism
2. Anemia and Beri Beri due to thiamine deficiency given her habit of consuming alcohol and poor nutrition.
I did a vaginal exam just to make sure she does not have cervical cancer and there was no abnormality.
She had visited 2 doctors in private and government clinic/PHC where she was treated for scabies as there were skin lesions and she had severe itching. She was also tested for blood sugar levels and blood counts where she had mild anemia. It was strange that she was left at that and was not thought to have other issues. 
Because she has problem with finances I wrote a letter to Victoria hospital and sent her in the ambulance that evening hoping they would admit her and evaluate what is the root cause and in that way will also be started on initial treatment from where I can take up as a primary care physician.
Because of her drinking problem I also wanted to get ultrasound abdomen to understand the status of her liver and probably an ECG as well.


But that evening they didn't admit her, instead asked her to get certain blood tests done. That's where the problem starts. She doesn't have a ration card which is what is required to get the tests and admission done free of cost at a Government setting. She didn't have the money nor anybody cared to bother why she didn't get the tests done and she returned home. So the next day, I requested the outreach worker to accompany her to help her navigate.
Due to the previous night's experience the women already had some resistance to make a second visit though she was so sick that she walked with much difficulty. We had to talk to her to make her understand that she and her mother would have support by the outreach worker that day. I also sent a list of investigations that I wished to get on whatsapp to the outreach worker. By evening when I could connect with the outreach worker, I learnt that they had given samples for testing, reports were awaited by that night and that they are returning home!

I was furious to know that she was not admitted and not completely evaluated. So went there in person to request the resident there.
Upon reaching with a friend who works in the ENT department there (who helped me!), we understood that they had paid 600 rupees for certain tests and they couldn't get certain others due to financial constraints. Again because they didn't have ration card!

I remembered from my experience in KR Hospital, Mysore which is a similar hospital to Victoria in Mysore, that in cases like these, we get a signature from the CMO (Casualty Medical Officer) permitting the billing person to make it free as she can't afford. So we did the same waiting at the CMO office.

Then requested the resident to admit her so that she can be started on Thiamine injections, all investigations including ultrasound, ECG etc can be done. He was kind enough to do so. Further onwards, we realised for every investigation that was written, the billing person asked for money and they had to get a signature from the CMO to get it free. It took 3 days for the family to understand this process. And the process of collecting reports, getting blood tests done, they navigated with the help of the fellow patient's relatives in the next bed. I kept in touch with the resident who was kind enough to share his number to understand what was being investigated, taking Neurologist's opinion, Nerve conduction study for her tremors, burning sensation. Looks like it is all due to alcohol dependence, and nutrition deficiency. I'm still not sure if the Thyroid function test was done, and am hoping to see her coming Friday and get it done if not done.
She will require supplements, and majorly close support to help her refrain from consuming alcohol.


This incident brought up a lot of anguish, memories from my previous experience in huge Government facilities and questions in my mind.
It is just extremely difficult to navigate the current gigantic system in Government hospitals. Not just for patients who need the care most but also doctors like me.

Where is the space for people like her to get all the investigations done in peace. To get the right treatment? To walk in without fear of having being cared for or having to shed all the money they might have.

Talking to the people at the hospital in the above interactions felt like people are not after all bad. They care. But the processes are just too flawed. Not thoughtful. Not for making it easy for anyone. Especially for the people most in need. If she wasn't admitted and investigated, where else could I have gotten all the tests done? Without money? These questions are haunting me. Because it's not one person, there are people I see everyday getting sub-standard care due to issues with these processes.
There is little interaction between people in these big institutes and practioners in the community. Be it Government or private practitioners.
I believe if there is improvement in the investigations capacity of first and second level Government hospitals, a lot of the burden on the tertiary hospitals might drop. Also we need a management/Ombudsman at these facilities to review the shitty processes and make it more easy for everyone.
Ration cards are meant to make it easy for people to access care. That doesn't mean lack of it should make it difficult/impossible. Afterall, is it so difficult to understand that anyone who's accessing care at the Government facility actually do so because of their inability to pay loads of money?

Also what if the billing person is thoughtful enough to guide the patients what to do when they don't have enough money? Work culture needs to be that of making it easy for the patients and deliver the best care. But work culture is the last thing that's discussed or thought of in our medical training. I remember how different this was at SVYM. Where everyone worked for the patient. With a little thoughtfulness, navigation becomes so much easier. Co-ordination is of utmost important when it involves so many people to care for a patient.
Yet there is very little reflective cross talk that happens between different people in such hospitals. And let's not blame the numbers of scale for this.

Looking forward to build relationships with the providers at these facilities to build a better navigational system. If you're a provider who relates to what I'm talking about please get in touch with me to build this together. (No matter where you work, Government/private/NGO). Any kind of help would be much appreciated in this complex system.

- from a motivated yet frustrated primary care physician.      

Reflection on "The Last Resort"

As a group readings activity 6 of us had to read read 5 papers and discuss the papers among ourselves and present our reflections on these papers, one each presenting one paper. We named our team "Social Justice League" and I enjoyed every bit of working in this team!
The Chapter "The Last Resort, why patients with severe mental disorders go to therapeutic shrines in India" from the book Restoring Mental Health in India. Pluralistic Therapies and Concepts by Brigitte Sebastia was the paper I had to summarise what inequities has been discussed, what sources of inequities were discussed, the methodologies used, processes that led to inequities, any ethical issues related to the study etc.

I thought this paper was significant in several ways:
1. It is studied at a time (2001-02) that is way after the Mental Health Act was in practice (1987). Thus shows how the Act was being practiced and what was the access like for mental health services in that time.
2. It depicts the equities not just for the access to mental health among different communities but also the larger inequity in how much importance was given to mental health as a subject, specialty and practice as opposed to other health issues. And the stigma around it.

We have often heard and I myself have made this comment when I had a patient who had post-partum psychosis and the family wanted to take her to a temple to make her better. I remember how I had spent a long time explaining to them thinking it's their belief that is at fault and why they need to be treated in the hospital. But later we took the decision of sending her to the temple and asking her to return after that. She did return!

We use the words "misconceptions/blind believes" to accuse the patients. But this paper describes what they found when they studied with an open mind as to why people were going to a religious shrine for therapy instead of medical treatments. It's not always belief/faith. It describes how the families ran out of money trying to get "free" treatment in the public hospitals and thus went to the shrines as a last resort. It also describes how the conditions were at that time where medical institutions/ asylums kept the patients isolated from their families, doctors seldom explained what the problem and nature of treatment was, Electroconvulsive therapies (ECT) were used more than required and was traumatising for the patients. While the shrines too violated the human rights by tying the patients to trees because of the abnormal behaviour to prevent harm, they provided an environment where the families could be a support to the person with mental illness. The families also had the social support of other families going through similar crisis. So even though they weren't becoming better, they found that a better place to be in.

Further it explains how this existing system was utilised by an NGO and a psychiatrist visit and medication was incorporated into shrine, making it more humane and acceptable.

The ethical concern I got caught up with is how much can a researcher be just a witness to these especially when it comes to violation of human rights? When such a thing is witnessed, should the researcher act on it? When does the role of researcher end and actor start? Can a researcher act on it? Even if they do, how sustainable is that? I don't think there is single answer to these. But understanding one's inclinations, intentions and positions in this as a researcher and explicitly stating it is important. These are few discussions that happened with Dr Vandana Prasad from Public Health Resource Network as well.        

 

What it means to wear the lens of health equity

Past few months have been rich with workshops. Tomorrow I'm looking forward to another one "Good Health Research Practices (GHRP)" by WHO-TDR. Before attending this I thought I should capture my reflections from the recent workshop on Health inequities research that I wrote in my previous blog post.

I always say I believe in Health equity. The 5 days of workshop really challenged me to understand what health equity meant. And how is it different from health inequity and equality. Hence I'm writing here to reflect on these through some discussion that happened in the workshop. 

Health equity is probably hard to define, but easy to define as absence of health inequity. But let's explore more.

There were two stories that stuck with me through the workshop and a few personal stories to share:
In the piece "What killed Annette Jean" in the book Infections and Inequalities by Paul Farmer, he describes the way a young woman less than 20 yrs old in Haiti died of massive hemoptysis (blood on coughing) because of untreated Tuberculosis. During this event, her brothers had to take her in a home made stretcher walking down the hill for more than an hour to only be told that she was not to be saved. Which year was this? 1994! This is a year when probably anyone reading this would have been easily diagnosed if had TB, treated and cured. So what killed Annette? A few might say their "negligence" or "ignorance" of the disease, their distance from the health centre, her gender etc. But what made her not seek care? or seek it only at a later stage? Why hadn't health care reached her? Blaming the patients for lack of awareness and ignorance is just a way of dealing with the issue in a superficial manner and hiding the underlying invisible unfair, unjust inequities that exist in the society. Is hiding a way of escaping from the invisible tougher reality of inequities? Are we in this process normalising injustice and forget asking deeper and provocative questions?

Another story of a young mother in Gujarat who was 8 months pregnant with labor pain who had to travel more than 190 km in 5 days in auto, bus, by foot, etc  starting from the day the pain started from one health facility to the other because each of them referred to the next and the family finally lost her and the child. Who's ignorance can be blamed here?!

These may seem like extreme examples but these are happening as I write in several parts of the world. But is it happening just next to us? In our own practice? Ofcourse, I see it in my daily practice and I'm sure you do too. On one hand a person who needs to make sure they're healthy gets all the tests possible (necessary or otherwise) while on the other hand another woman I saw on the same day had no money to get her sugar checked to monitor her diabetes. While a transgender person though might have the money to access health care, faces disrespect from the society and family making them not care for their health. A lady who is quiet well to do, working has no time and mindspace to take care of her health because she has to put her family, and parent's well-being first. We see this in our families, in our practice, in the society. All these are representations of inequities. Questioning them as unjust/unfair and avoidable is what it means to wear the lens of health equity. "Avoidable" here is very subjective, what may seem avoidable to one may seem unavoidable to the other. But avoidable here means all those inequalities that arise due to unnatural causes, societal causes, social hierarchies though may seem difficult to avoid must be considered avoidable. Because it's about human rights and justice we are talking about. Not whether you or I can solve this! Are all inequalities unjust? Not exactly. If the inequalities exist due to natural causes like aging, biology, they are unavoidable and are not unjust. They are mere inequalities but when they are a threat to justice, it becomes inequity. Here's an article that tries to define health equity in a very nice way. https://jech.bmj.com/content/57/4/254 (was shared as a resource by the workshop team)

Isn't this just social justice? It probably is. Isn't asking this just being a good citizen? Ofcourse it is. And health care professionals dealing with lives more than anyone else have greater responsibility and power to question these.
How do we question these?
It could be by advocating for your patients, by writing articles, by sensitizing people on the matter, through research, through questioning the accountable authority, a mix of all of these-  research, activism and practice. For eg, in the above example of the mother who died a adorable framework was asked to be used to find what caused the equities and the situation that resulted. We had to assign the various gaps as "Science/technical, Systems, Social, and Rights factors" (SSSR) and recommend what actions can be taken to fill these gaps and by whom? We were given a group reading activity as well to understand these inequities about which will be in the next post. Why do we need to understand these inequities and the pathways that lead to it? So that it gives us an insight into where we can work on and how to reduce it. Dr Devaki mentioned how the pathways that lead to inequity and equity might not be the same but it's important to understand one in order to work towards the other as they often have similar milestones or cross their ways.

Workshop on cutting edge research on health inequalities: Concepts & methods. Day 1 Power Walk

In September with much enthusiasm I had applied for this workshop conducted by HENI, George Institute for Global Health, Azim Premji University and Heal. I've written about my application in my previous post. This is the first workshop I'm attending with "Health inequities" as the main concept under discussion. Ofcourse other workshops and seminars at IPH are always talking through this lens including the recent workshop on Realist Evaluation. 

Today was the day 1 of the workshop. It's a 5 day workshop at Visthar CRC and we are provided accommodation for all the nights so that we can spend enough time with everyone and even as Bangalore residents not worry about commuting daily. I took an auto and reached well in time for the lovely breakfast.

Like the name of the place "Visthar", the discussions and people participating in the workshop were also quite diverse and multi-dimensional. Workshop started on time by 9 am when we were seated in a semi-circular warm fashion. Introductions of the main speakers of the day Dr Arima Mishra, Dr Devaki Nambiar and Dr Tanya Seshadri followed by participants were done.
I was delighted by the diversity of the group in terms of their background, the current organisation, work and communities they work in. We were a little more than 20 participants, and just to depict the diversity, there were social scientists, people from law background, journalist, Anthropologist, from companies, George Institute, Centre for Equity studies, professor at a University for public health, ICMR, TDU. People working with tribal communities in various places, rural communities in Bihar, for maternal health in Orissa, homeless people and migrants in Delhi, LGBT communities in Chennai, Bangalore (that would be me) other communities in Kerala, Pune etc.

Following introductions, we had a cool exercise facilitated by Dr Renu Khanna called "Power walk" (also known as Privilege walk I guess) where we were each given a slip with an identity and we were made to stand in a horizontal line and take a step forward only when the facilitator read something that we thought we as the given identity could actually do in life. I was a 14 year old school boy. So the statements made were like, "I have access to 2 meals a day", "I can read the newspaper everyday", "I have access to information regarding TB and HIV", "If my parents were to die, I would inherent their property/have rights to their property" etc. I had to add layers to my identity  in order to decide whether I could take a step forward to these statements. So I added that I go to a Government school in a rural area. By the end of the walk we were all scattered with a few reaching the end, a few having not taken any steps at all and most in different levels of middle area. We then discussed about how these inequities played it's game. How each of the layers influenced the person to be more or less privileged (concept of intersectionality) How we felt being left out/going ahead, how our own biases and stereotypical thinking influenced our steps. Like how we assume that a woman though being a police has less privilege.

We then had lecture 1 on Intersectionality by Devaki Nambiar and lecture 2 post lunch on Concepts and frameworksby Arima Mishra and Devaki. To read, follow the next post.

  

Real Governance and Democracy

One of the days, at SOFA, we could observe a workshop that was conducted for the village men and women (I think farmers mainly). About 20-25 people were part of the workshop. This was one of the workshops that THI has been doing since a while in order to improve the awareness on Gram sabha structure, functions, democracy, governance and how they can participate in it. This was conducted through members from the Barefoot Academy of Governance. When we joined in the middle of the workshop as observers, we saw that the participants had badgets with their names written in Tamil on their chest. They were split into 4-5 teams and 2 people from each team came up and spoke about the problems that they think are faced by Sittilingi should be prioritised as well as the solutions that they could think of. They had charts in which they had even listed these. Toilets are constructed but most are not working..wild animals destroying their farm, they need a bank in Sittilingi, water, etc

I found this fascinating and very engaging and isn't this what democracy should aim for? I hope their meeting in actual Gram Sabha goes well!

Conversations with Gi and Tha

I've tried my best to capture the learnings from our conversations with Gi and Tha here. (Note that the statements are not quoted but are reflected from my learning)

While we were having conversation with Gi, he got a call and then he took us with him to SOFA (Sittilingi Organic Farmers' Association) in his car where they were showing the documentary of Tribal health Initiative to a group of people from Teach for India organisation. The documentary is partly here.

The above part of the video also covers one of the major messages I took. They talk about a man who had fractured his finger and how they talked to him about fixing it with a small procedure. In that conversation when they learnt that he wished to go to a traditional healer who would immobilise the finger and probably some additional techniques, they told him what that might cost him. His finger might not get straight and that he would remain with certain amount of restricted mobility. He was okay with these consequences and hence they agreed to not do any procedures. Patient preference and shared decision making to it's fullest!
This portrayed several principles-
1. Keeping patient at the centre and doing the rest with the intention of getting him/her better is the first thing. This approach helps in dealing with our internal inconsistencies with our notion of what is right and what we think the patient wants compared with what actually the patient wants.
2. Having a healthy working relationship with all providers as much as possible to bring the best to the community. In the above they didn't blindly object him to not seek care from the traditional healer but told him the consequences.

Gi was also later telling us how he dealt with the healers who go on vehicles and give injections. To avoid transmission of infections, they helped the healers in at least using fresh syringes and needles. 

Post the documentary, members from Teach for India interacted with questions posed to Gi.
When asked how they (Gi and Tha) dealt with disappointments when certain things didn't work, he narrated how they had to be persistent for 2 years with several meetings for 4 farmers to join in together to start organic farming and now they are 500 members running this association of organic farming which has helped them have better crops.
Being open minded to different solutions, coming from anywhere is something they follow. For eg, they had initially trained young girls from the communities as health workers so that they could care for their community. When they learnt that the community were not accepting the advice from these young health workers due to their age, they shifted their focus on training the elderly. Also the young girls became excellent health care professional at the hospital. They do everything!
So the shift from solution focused thinking to problem focused thinking is what kept him going, trying new things, taking on new challenges and solutions.

How he chose that community to work-
Gi and Tha wanted to work at a place where people needed them the most. Since they already were familiar with Tamil Nadu, they listed 5 places that were back then very poor in terms of health and health care access. They planned to visit each of those places and decide on one. Sittilingi was the first in the list and they fell in love with that place. Honest and practical answer :)

I later asked him, how he deals with the fact that there are several communities like Sittilingi out there who need this but he can't reach all of them.
He simply replied saying that time would teach us that. When we start out, we have the attitude of "I will change the world", but world can be changed bit by bit, block by block by several people I guess.

How do they find enough time to do all the things they did or were doing? Like seeing patients, talking to farmers, etc
If the purpose is clear and work starts, adrenaline would just let you work and somehow make time for everything.

How did they manage to have enough money for personal life?
He described how people doing such work often don't expect to make a lot of money. He was explaining how if one doesn't have a major financial commitment like taking care of parents, loans etc, one then need money only for one's survival. And while doing such good work, things often fall into place. Basically at least to start with such journeys, we need to be open to expecting time when we'll be making just enough money to survive. Which is alright. Risks are to be taken. He gave us the example how when he tried admitting his sons to school with a substantial fee, the school administrative waived off their fee due to the good work they were doing.
So money will always be a problem and with good will solutions will eventually come our way.

He asked me and Akshay to think and discuss amongst ourselves about what each of us would want to be doing in life after 10-15 years from now. Where we'd be living, what work we'd be doing etc in order to have clarity of each other's space, synergies, strengths and to understand each other.

Interesting conversation about whether we need to do postgraduate degree-

The approach that he takes is that any training and learning adds to the skill set of oneself and thus will only benefit the people we are serving. So learning and getting degrees in fields like surgery, obstetrics, which are of much need in communities would definitely help you serve better. It will also help us to be safe from legal regulations present or those yet to come. While certain other fields like medicine usually doesn't require a degree more than MBBS for regulatory purpose. But an attitude to learn anything and that it's possible to learn anything is much needed. To decide on whether one wants to take PG or not, one has to decide on how deep he/she wants to get into treating patients or clinical medicine. This is something I'm thinking about.

Speaking of learning anything, the approach that he took was based on the need. So Gi said he learnt how to do ECHO and recognise basic heart diseases when he was 59 because he realised that they were referring quite a lot of patients only for this; He learnt how to do ultrasound, even did a certificate training to be legally safe in order to benefit the community. In fact on the OPD day we got to see him scanning.
I loved that they continue to be in OPD, practice, and still are involved in all the other activities, administration, and social aspects.

We caught a conversation with Dr Lalitha (Tha) on another evening at Porgai (meaning "pride" in Lambadi language) and here it is-

How did she decide that she was ready to stick to Sittilingi and work in one community for such a long time?
She gave a very genuine perspective of how in her generation people were expected to and were even judged based on how committed and long they worked at one place/job. That was the norm. But the recent generations she has seen have a lot more interests and often jobs don't offer space for all of them and thus fail to keep them and hence people explore and move to different places/jobs after 1-2 years to explore further.
All she knew is that she wanted to work for a community. Once she got into it and started working with them, she realised it takes one's lifetime to bring about transformation. And communities also grow with time. Their needs change, old problems are no more problems, there are new problems envisaged or not. So there are always new experiences and mindset required for growing with the community, recognising these, accepting these and thus she finds it interesting.

She said certain consequences have to be thought of and made peace with. Letting go of some interests that may not be possible to continue..dancing..singing..etc that doesn't find space.

How she decided that she had to get a degree in Obstetrics?

Initially due to the gender expectations, people were expecting her to take PG in OBGYN and she clearly had resistance to this attitude. But later when she realised maternal health was such an unmet need, she pursued it with an internal drive and desire. Resisting the resistance she had before.

She has a very warm perspective on child birth experience and encourages even assisted home delivery but "Safe delivery" is what she thinks should be endorsed.

When the current health system brings frustration, how does one decide whether to fight the system or just continue to work around it through our own ways?

Fighting the system is an ideal thing to do and she often feels frustrated that their response to certain political events are passive. But she also said that when an organisation becomes a part of the community, it is no longer about personal interests alone but decisions have to be taken collectively. Also that such rights based approach usually needs to be done from the beginning. Instead of Either or approach a combination of these efforts are needed. You can't expect a community who aren't even getting their basic life necessities getting fulfilled to spend their effort in only fighting for their rights and demand accountability.

She encouraged us in our endeavors, gave us a warm hug and asked us to visit them again. While we walked with her in darkness and a torch to her home, she described how safe  Sittilingi people were from each other. As in, she has not locked her main door in the last 16 yrs. She can trust people, but this is changing. But as stated before communities grow, change, we accept the new developments and also new problems.

Next morning, we wished Gi, met doctor Jerry and left Sittilingi with a lot of contentment and inspiration.  

           

Journey to Sittilingi

We caught the bus in time that left Puducherry at 5:30 am to reach Thiruvannamalai. 2 days before this we contacted Dr Regi George (Gi as he is called) to see if we could meet him and also stay at their hospital. He was very welcoming and told me in detail about what bus we had to take, and what bus to take if we missed one of them. It's also described here on their website.

We used google translate tool to decode the tamil boards on buses. I learnt it only this time. It's quite efficient. You take a picture of the text and select on google translate app and voila!

From Thiruvannamalai, we had to take the bus going towards Salem but one that takes the route through Naripalli and stands at a different place than other buses to Salem. We caught a bus called Sumangali going towards Naripalli but later realised it wasn't going to Sittilingi. Nevertheless we got down at Naripalli and decided to figure out our way.

I'm happy this happened because we got to interact with an elderly lady with her grandson and a elderly man (not sure if they were related to each other). She had taken the boy to see a doctor at Salem because he had developed cellulitis of his fingers after an insect bite. We told her that we were doctors going to Sittilingi and both the lady and the man made sure we got into the right bus. Meanwhile she showed all the medications that the doctor had prescribed and I communicated using google translate and translate from Akshay who knew koncham (partly) tamil.

We reached the tribal hospital that afternoon.

At lunch in their canteen, we met a young doctor who had just finished pulling out a baby through C-section in OT.

After lunch, we got to meet Dr Regi (Gi) who along with his wife Dr Lalitha (Tha) started this work at Sittilingi in 1992. Told him about ourselves and our current work and interests and the intention of the visit.

There began the conversations that blew and widened my mind. Have you ever felt this when your thoughts are being broken, barriers being brought down and felt like your mind just expanded like alveoli with fresh gush of oxygen? The feeling was this to be precise. Conversations with Gi and Tha deserves a separate post.
That night Dr Palani, a young doctor was kind enough to take us to the guest house in car. Oh, his blog is another lovely piece to follow.

Next day, we got cycles for us to go around Sittilingi.



We even went on a nice morning walk through the fields